Grandmother starts Autism Speaks Walk to raise awareness

by Kathleen ThurberMidland Reporter-Telegram

Published 7:00 pm, Wednesday, March 31, 2010

After family members observed her 4-year-old grandson Colin sitting in a corner alone during a chaotic afternoon of group play at day care a few years ago, Malissa Roach said they worried something was wrong.

The suggestion of autism by Colin's uncle wasn't something they were all ready to hear yet, Roach said. But as they continued researching and observing the toddler and his lack of communication and social interaction the disorder seemed to fit.

"Right then that was just it," said Roach, who is organizing Midland's first Walk Now For Autism walk taking place May 8. "It made sense."

Still, even after the family realized Colin could be dealing with the developmental disorder, Roach said it took more than a year for him to be diagnosed.

Blood tests and body scans don't provide an answer to whether a child is dealing with autism, so it often requires time with a developmental pediatrician and several tests to determine if a diagnosis is appropriate.

Roach said they traveled with Colin to Houston before finally getting an answer after another doctor saw Colin and simply replied he "didn't look like" he had autism.

With a diagnosis, she said, they were able to enroll her grandson in early education classes that have been helpful. Beyond that, she said, she and his parents still felt at a bit of a loss.

So she started Googling and stumbled upon Autism Speaks, an autism science and advocacy organization started by another set of grandparents. The group now has chapters in more than 75 cities nationwide that each hold an annual walk to raise awareness and funds to support research of the disorder.

After a few months of working with the group, Roach said she convinced them Midland could support its own walk and planned it for the same weekend as a similar event in Abilene.

"I'm hoping to raise awareness as to what autism is, how common it is," Roach said.

Already in raising awareness, she said, she's found a support network for her own family.

More than 130 individuals have registered for the walk, and Roach said they expect to have 400 to 500 participate.

Many of those who've signed up or just heard about the event, she said, come up to her to tell her about their friend, grandchild, niece or other relative who has autism.

"As a grandparent just trying to navigate it by myself, it was difficult," she said.

With those who've come alongside them, she said, they're learning more. In addition to the walk they're now planning to set up a resource fair so parents with children who have an autism spectrum disorder can learn what's available locally to help them.

"I don't think it's as recognized as it probably should be anywhere," Roach said.

In catching the disorder early, Roach said, children can sometimes make more progress. Her own grandson's vocabulary has increased from no words to between eight and 10 words since he started early education programs. He's also more willing to be in the middle of people, even if he doesn't want to participate in the activity.

The walk itself is free, and Midlanders can participate as part of team or as an individual. Fundraising is optional. More than $10,000 locally already has been raised.